20.Supplementary memorandum from the Medical
Ethics Alliance (MIB 1203)
1. Would the inclusion of a legal definition
of "best interests" clarify the legislative intent of
the Draft Bill or would such a definition be unduly static and
inflexible for decision-makers?
The Joint Committee should ensure that the Draft
Mental Incapacity Bill includes a clause that prohibits the withdrawal
of food and fluid however delivered with the intention of shortening
life. Food and fluid should not be withdrawn unless the means
of provision is evidently burdensome to the patient. There should
be no requirement that such provision should improve the condition
of the patient since this may not be possible. Parliament must
acknowledge that without nourishment and fluids all human beings
will die. The criteria used to consider "best interests"
are far too vague. Lord Brandon's "principle of necessity"
should not be discarded. A treatment should be considered necessary
"if, but only if it is carried out only to save their lives,
or to ensure improvement or prevent deterioration in their physical
or mental well being." (Ref: Re F 1990 2 ACl). See also Northridge
v Central Sydney Area Health Service [2000 NSWSC 1241] 29 December
The Mental Incapacity Bill should comply with
the Universal Declaration of Human Rights 1948, which forbids
discrimination on the basis of personhood. Article 6 declares
that "Everyone has the right to recognition of a person before
the law." Please note that this applies to everyonethe
old, the disabled, children with severe learning difficulties,
those with brain damagein fact all people whether they
are deemed to be mentally incapacitated or not.
Parliament should note that many people with
conditions that fall short of a permanent vegetative state are
having life sustaining food and fluids withheld with fatal results.
In some cases this amounts to euthanasia by omission. Elderly
stroke patients who cannot swallow are at particular risk. The
concept of "Best Interests" should be restricted to
clinical best interests otherwise it can be open to misinterpretation
and misuse. The best interests of the patient will invariably
include the provision of basic care. (For definition of basic
care see answer to question 13).
We are concerned that the law is proving a weak
defence in practice. There can be no adequate legal definition
of "best interests" that fails to recognise the right
to life. Judges can be ill informed and prejudiced on matters
of medicine and ethics.
2. How should the individual's clinical
best interests be balanced against their wider interests?
There should never be a conflict between an individual's
clinical best interests and their wider interests unless it is
ever considered "this patient would be better off dead."
This however is a philosophical value judgment that "this
person's life is no longer worthwhile." The "best interests"
of a patient are never to be killed by an act or an omission.
3. In your view, should the General Authority
be restricted to particular categories of medical interventions?
If so, what restrictions would be appropriate?
Giving Lasting Power of Attorney to a proxy
in medical decision-making is inappropriate. Since doctors frequently
get diagnoses wrong the potential for proxy decision makers to
make poor medical decisions is even greater. Making decisions
"in good faith" will not ensure greater accuracy. According
to evidence presented to the Scottish Parliament in 2000 the congruence
between the views of patients and proxies is often minimal with
some studies suggesting it is no greater than chance.
Social service departments in England and Wales
are often financially involved in the care of patients in residential
and nursing homes. From April 2004 we understand that they will
be fined if patients awaiting placement in the community block
hospital beds. Thus they may have a vested interest in the patient's
early death. This being so, social workers should not be made
court deputies and given powers of life and death within the terms
of the Draft Mental Incapacity Bill. Parliament should also be
aware that pressure of work and shortage of beds in the Health
Service combine to make many doctors resentful of elderly bed
blockers. This is exceedingly dangerous and may lead to inappropriate
decisions to withhold life-prolonging measures including nutrition.
There are indications that the life expectancy
of women may have decreased in the last four years in areas that
have a high proportion of elderly people. This may be a consequence
of publication of the BMA guidelines on Withholding and Withdrawing
Life Prolonging Treatment 1999. This trend if confirmed requires
further investigation. In the opinion of Richard Gordon QC, the
Mental Incapacity Bill is incompatible with article 2, taken in
conjunction with article 6 of the European Convention on Human
Rights, because it fails to comply with the state's obligations
under article 2 to provide practical and effective protection
of the right to life.
4. Do the provisions contained within the
Draft Bill enable people to be sure that their beliefs with regard
to treatment will be respected if they lose capacity? No. The
cards are stacked in favour of discontinuing treatment or sustenance.
There is no provision in the act to make an advance directive
in favour of continuing treatment or sustenance, only in stopping
it. The refusal of treatment is given respect but request for
nourishment does not seem to have the same respect afforded it
5. Should the Draft Bill specify that a
person acting on behalf of a person with incapacity should have
regard to their values as well as their "wishes and feelings"
when deciding what is in their best interests? There is a dangerous
subjectivism involved in deciding what is in someone's "best
interests". Values are important but evaluation of "best
interests" should be made on objective criteria, not subjective
ones. An important additional point is that the values of doctors
and nurses should be respected. Health care professionals from
any faith tradition, which abhors the deliberate taking of lifewhether
by action or omissionshould have the right to protect their
6. As in our society people choose to adhere
to different values and beliefs, do you consider that the Draft
Bill achieves the right balance between respect for individual
diversity and respect for life? If not, what would you change?
Respect for life is an elastic concept because it can be more
or less. If respect for life diminishes to the point where a person's
life is considered to be not worth living, then "respect
for life" ceases to have meaning. The principle of the sanctity
of life, which protects patients from killing by action or omission,
is the only foundation on which to build an ethical framework
strong enough to resist utilitarian pressures.
7. In your view does the Draft Bill distinguish
between ending life by omission and not aiming to prolong life
by inappropriate means? If not, what safeguards would you like
to see? No it does not. It gives scope to ending life by omission.
The bill should make it plain that food and nutrition is not medical
treatment but part of basic care. Withdrawing this with the intention
of killing the patient is always wrong, though it may be necessary
occasionally to withdraw tube feeding for a time if it becomes
burdensome to the patient (eg causing diarrhoea).
8. Will giving advance refusals a statutory
basis risk the welfare of patients? If so, how might the Draft
Bill be amended to avoid this?
Yes. Advance refusals have already been shown
to risk the welfare of patients. They shouldn't be made legally
9. Should the Draft Bill stipulate that
advance decisions must be made in writing? Yes of course they
should be made in writing. There may be no proof of verbal wishes
and this can lead to disputes in court. Directives should be carefully
considered decisions made with the fullest information although
no matter how good the information is, it is impossible to foresee
every circumstance. They should not be made under duress and be
guidance only. Patient's wishes often change with changing circumstances.
Some people have lived to be thankful that their death wishes
10. In your view are the safeguards in the
Draft Bill sufficient to protect individuals who suffer from fluctuating
levels of capacity? The fact that "best interests" is
not defined allows the possibility of the application of "futile
care theory." This is a position adopted in the cases of
Anthony Bland in 1993 and Mrs M and Ms H in 2000 where the patients'
lives were considered to be not worth living. There are very few
safeguards in the bill since the proposal to vest the power of
life or death in the hands of an attorney doesn"t seem to
carry any accountability. There should always be a presumption
in favour of life.
11. The Draft Bill puts into statute the
current common law position as regards advance refusals. Would
denying capable individuals the right to make statutorily enforceable
advance decisions to refuse treatment amount to a form of discrimination
against people who later become incapacitated? No. If anything
it would be a safeguard. If advance refusals are made statutorily
enforceable, an incapacitated patient might be at increased risk
if their earlier wishes were inappropriate and ill advised because
nobody could then protect them.
12. Do you envisage that there are any medical
circumstances when the wishes expressed in a valid advance directive
(or a person's wishes expressed through a donee acting under an
LPA) might reasonably not be followed by the treating doctor?
If so, can you give examples?
We are concerned about clause 24 which will
cause considerable chaos and muddle. It is unreasonable to expect
a busy doctor to ponder all the possible factors that could invalidate
an advance directive. Examples might include the following circumstances:
If the treatment proposed is not
the treatment specified in the AD or where a different drug is
If there is a change in medical circumstances.
For example, new treatments for dementia, CJD, AIDS etc. Section
24(4) describes circumstances where new treatments develop which
were not known or foreseen by the patient at the time they made
an advance directive.
If there is a change in prognosis.
Patients diagnosed as suffering from a "Permanent Vegetative
State" or other severe mental incapacity who may recover
slowly over years. (See case 1 in annex).
If there is a change in social circumstances
when necessary support is given.
If the patient had been suicidal
or depressed when they made the AD.
Where there is doubt over the wording
of the document. The doctor might realise that the condition was
eminently treatable with a good chance of cure or significant
13. Should the Draft Bill exclude "basic
care" or a "minimal level of care" from its procedures
and mechanisms? If so, how should "basic care" or a
"minimal level of care" be defined?
Yes. That is most important. Basic care should
be defined carefully. It includes:
(a) Provision of food and water by any reasonable,
appropriate and proportional means that do not cause the patient
(b) Basic nursing care and bodily comfort
(c) Warmth, clean dry clothes and clean
(d) Shelter and humane friendly support
in safe surroundings.
(e) Pain relief short of deliberately ending
It should be emphasised that the provision of
food and fluids via a tube is not "medical treatment."
There is no illness or pathology being treated. The BMA Ethics
Committee's guidelines have not been endorsed by the profession.
The committee needs to be aware of the fact that a fully functioning
cerebral cortex is not needed for the sensation of thirst. Most
people would be shocked to know that the provision of food and
fluids via a tube is now called medical treatment so that it can
be withdrawn. If it is considered to be inhumane to starve or
dehydrate and animal to death (by withholding basic care) then
at least the same protection should apply to human beings whether
mentally incapacitated or not.
14. Do all the witnesses agree with the
Catholic Bishops' Conference view that the Draft Bill currently
contains insufficient safeguards against donees who fail to carry
out their responsibilities properly? If so, how should these safeguards
(a) Too much power is proposed to be vested
with donees. They should have an advisory capacity only.
(b) Doctors and other health professionals
must have prompt access to court to appeal against decisions.
This implies access to good lawyers and properly funded legal
(c) Decisions should be monitored by an
15. Should Local Authorities be given duties
to investigate possible abuse taking place under the provisions
of the Bill? Would this approach help to address any concerns
you might have about the exploitation of vulnerable people?
See answer to question 3 above relating to dangerous
conflicts of interests with local authority social workers.
Case 1. From a nurse working in a centre in
the Midlands specialising in the care of severe brain injured
patients. Mr S, a 43 year old man who was admitted to us following
extensive brain surgery was only able to blink and move a thumb.
Three years later, after extensive rehabilitation he can walk,
talk, eat small mouthfuls if diet, is continent and fully aware
of his surroundings. He is glad he is alive now and when made
aware of this new bill had this to say: "I disagree with
it. No one has the right to make that decision. Everyone should
be given the right to live. I always knew I was going to get better."
Case 2. Elderly lady who suffered a stroke.
Starved for 48 days in a hospital in England. Doctors equivocated
about a PEG. Relatives could not agree.
Case 3. Elderly woman. Teaching hospital, Scotland.
DNR order made against the wishes of the son. Naso-gastric tube
in situ. Given tap water only for seven weeks. Died. No inquest.
Non-clinical "expert" advised the coroner that all was
done "in the patient's best interests."
Case 4. 83 year old lady. Minor CVA. Swallowing
impaired. No food or water given. Died day eight in residential
Case 5. Elderly lady. CVA. Not hydrated. Died
day six in nursing home.
Case 6. Elderly man. Had drip but no food for
six weeks in hospital. Too weak for a PEG. Could swallow but not
being fed. Died.
Case 7. 89 year old lady. Swallowing problems,
long standing vague undiagnosed neurological problem. Doctors
procrastinatedadmitted too late for PEG. Died in hospital
weighing six stones.
Case 8. Terminal cancer patient. Age 54. Sedated
without hydration for eight days in hospice. Staff refused to
set up a drip. Patient died in dehydrated state.
Case 9. Cancer patient in pain from isolated
metastasis age 66. Not dying. Sedated without hydration in a hospice
and morphine increased despite pain control. Died comatose and
dehydrated after seven days. Widow finally after six years' struggle
obtained an independent opinion that supported her view that the
patient was killed to cure his pain. Legal aid withdrawn before
case went to court.
Case 10. 85 year old woman in nursing home.
GP covered. Could swallow liquid, tended to choke. CVA's and some
dementia. Feeding supplements stopped by GP. Patient took 58 days
to die of starvation and bronchopneumonia.
Case 11. Mrs W. Elderly woman in rural cottage
hospital. Conscious, unable to speak, too weak to swallow. Found
by locum doctor undiagnosed and dehydrated in a side ward. Responded
well to subcutaneous fluids. Within days could speak and drink,
happy to be alive. Considered to be a "ghastly survival"
by in house team.
In case 10 above, the relatives tired of waiting
for Mrs O to die. Asked GP what would happen if feeding supplements
were stopped. Collaborated in her death.
Case 12. Elderly woman in hospital not fit for
discharge home. Money available for nursing care. One daughter
hid this fact from doctors who sent her home against the wishes
of another daughter. She fell within days and was readmitted with
pneumonia and died. Scheming daughter got her inheritance.
Case 13. Terri Schiavo. Florida October 2003.
39 year old woman with cognitive disability after collapse from
unknown causes 1990. Husband won 1.3 million dollars in a malpractice
suit saying he would look after her for the rest of his life.
Within months he got a DNR order place on her and denied her medical
treatment. He dated another woman and is now engaged to be married.
In 1998 he petitioned a court to withhold tube feeding and fluids
until she died claiming that this is what she wished on the basis
of comments he states she made before she collapsed. Terri's patients
dispute this. She responds to them and they are able to feed her
orally. They want to look after their daughter but a judge refused
and ordered her execution by removing her feeding tube and starving
her to death.